Just to let you all know - our daughter is doing really well for now. She heas been "well-ish" for 3 weeks - no really high fever spikes - no really severe bouts of pian. A little feeling "off" and nauseated, tired etc - buut nothing major - so this is heaven!!!
Our rheumy is now thinking it is not JRA but cannot completely rule it out as her symptoms are all over the place. He is thinking a "Periodic Fever Syndrome" of some type of the really rare variety as noone can diagnose it according to text book style syndromes.
I haven't posted for ages as this thing was dominating our every minute and it was doing my head in - so I have had a 'break' - for her also - we can't forget it but we can live for the moment and she has been better than ever for a couple of weeks.
They are tabling her case at a conference at end May - so I will let you all know what they come up with.
Until then - hey, hopefully this 'thing' is burning itself out and who cares about a diagnosis - but hope and pray that it does not come back with a vengeance as it normally comes back worse than each previous bout.
Oh, the latest thing her bloods showed was a severe deficiency in Vitamin A - so she is taking a strong dose of it (with her naprosen and zantac every day).
she is a good girl - hopefully it is coming to an end???!!! I hope so.
Thanks to all for caring and I may be absent for a while to enjoy our pain and fever free days - but look out if it comes back!
Nelly
HI Nelly
Iam so pleased that your daughter is doing so well, have a really great time enjoying your days together.I wish all the best for her and your family.
Take care
Lisa
Dear Nelly, We understand, on the board, how you must feel. A few days to relax and enjoy 'life'. It is good to hear your 'good-ish' news and that she is feeling a little bit better. I do hope you get some rest and enjoy a little normal life. Crossing my fingers for you and hoping 'they can find out how to treat her. Thinking of you. Be sure to let us know either way. Sarah That is sooooooooo wonderful!!!!! I rally hope she continues to get well! Enjoy these fever and pain free days with her! This is the best news!! Oh I hope she continues to feel better and better.. It is just so frustrating when our babies are sick..